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 AUTHOR
 psychman
Joined: 8/5/2005
Msg: 1
FibromyalgiaPage 1 of 8    (1, 2, 3, 4, 5, 6, 7, 8)
Anyone have any experience with this condition? Someone very close to me has been diagnosed with it.
 sammysalt
Joined: 9/7/2005
Msg: 2
Fibromyalgia
Posted: 10/11/2005 9:56:29 PM
Knock out flour and suger completly for two months and she will be feeling better most likely. Talk to doctor first. Don't knock it until you try it. It works. No cheating. You have to clean out your system of the built up fluids. The flour and suger, causes the fluid to get thicker than normal which confuses the brain signals to where the help is needed.
Your body is saying help me, and help is being sent out, but don't know where to send it, so it keeps sending it out. Over time it builds up in the system, and there gets to be more problems from it. Brain waves don't flow well in thicker fluid. Its hard to pin point where the problem started at, that had the thicker fluid around it, that needed the help in the beganing. So it never got help. Now you have more fluid getting thick at other places in the body as well. They aren't enough to show up in test, just enough to mess up brain waves.
After you start feeling better, start adding your suger, and flour back in, keeping track of your carbs. So you know when the signs come back to let off again, and to how many carbs you can be o.k. with. Mostly comman scence.
I have it, and don't have to take meds for it no more after I did this. What can it hurt to see if it works for you to. Talk to your doctor first. I am not a doctor. I just did a lot of reading, and kept track of mine, and put two and two toghter, and it has helped a lot of people, be med free. so talk to your doctor. If you don't know about carbs, check akins diet to learn. Its easier to just cut out suger, and flour. Just my intake on it, each to their own, all people are different. I will tell you its nice to live like I don't have it. So think about it.
 psychman
Joined: 8/5/2005
Msg: 3
Fibromyalgia
Posted: 10/13/2005 5:14:01 AM
Thank you so much for your advice. I will pass it on to my friend.
 ~softEDGE~
Joined: 6/12/2005
Msg: 4
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History
Fibromyalgia
Posted: 10/15/2005 7:52:07 AM
yup; got it, had it for at least 17 years before much was known.
docs scared the crap outta me after a sedimentation rate blood test,
(which rates the amount of pain in system; not the cause or location of...
it's determined by the rate at which certain cells fall from others via a spinning machine)
normal range is 6-10; i was at 66... and curled up, felt like i was dying from joint pain.
from my high rate they told me straightout i was rheumatoid variant
or had some undetected rare form of cancer...which i didn't and don't.

sammy beat me to it;
avoiding sugar/flour/processed foods is key in tackling this excruitiating "syndrome".
also, yoga/beginning pilates or simple stretching excercise is important too.
personally i like hydrotherapy because it's stress reducing.
but so is getting involved in activities you like and can lose yourself in.
keeping a journal of what's going on with you may help you find patterns to avoid.
and can also be therapuetic too. as can meditation and relaxation techniques.
when i get a flare that has overwhelming pain the stubborn part of me tries to hold out.
i don't like pain meds, but a child's dose shot of kenalog has me better in a few hours!
i am also chemically sensitive/severly allergic to many drugs and everyday things.
felt like a freak till i took an active part of self learning regarding this insiduous thing.

don't let the diagnosis become you,
keep searching for what works best for you.

seek and you shall find, this works if you put it into practice, i promise!
gaining control over your own health is the answer.
anyone would try anything to feel pain free, and it's easier than it sounds.
 ~softEDGE~
Joined: 6/12/2005
Msg: 5
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History
Fibromyalgia
Posted: 10/15/2005 8:16:00 AM
i meant life threatening emergent allergic reactions;
no more shellfish (sigh, a small thing, but i do miss it) or tylenol and many other meds, both over the counter seemingly harmless, and prescription for me.
any new medication is a gamble,
i have to be monitored in a quick care or er while taking first doses of new meds.
even some homeopathic and "natural" remedies can be threatening.
anaphylaxsis is not a pretty thing;
literally fighting for life and breath is a serious and sometimes fatal condition.
what attacks some does not attack all; everyone's body is so different,
medical science isn't the end all answer.
different meds have also saved my life, under extreme supervision.

i hope everyone with fibromyalgia doesn't have all that comes with mine.
it can be pretty much a nightmare;
but also another chance to learn and understand what works and doesn't~
personally, that has been the key.
 ~softEDGE~
Joined: 6/12/2005
Msg: 6
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History
Fibromyalgia
Posted: 11/7/2005 5:40:25 PM
ok, i feel like a real dork here,
particularly in light of my prior posts in this very thread.
i'm in the throes of an excruitiating flare and besides myself.
i went to the doc today after not getting much sleep this weekend past.

now i hafta wait for the referral to a new rheumatologist as my insurance dictates.
meantime i'm using alternating ice and micro rice packs and small doses of ibuprofen.
that lemon cheesecake in raspberry sauce yesterday after lunch really kicked my ass.
and i even had a kenalog shot last month.
sighs.
back to physical therapy and dr ordered massages too.

i abhor this "syndrome."
 ~softEDGE~
Joined: 6/12/2005
Msg: 7
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History
Fibromyalgia
Posted: 11/7/2005 6:59:02 PM
thank you, franny z, for your kind words.

i refuse to take and become addicted to any of the many meds i have been prescribed.
one of my biggest problems is not acknowledging this diagnosis and carrying on as if i don't have it, that is, until it becomes so debilitating and severe as to interfere with my work.
as yet i have tinkered here and there with my own dietary restrictions to no avail; save for as sammy stated, avoiding sugars, flours, and heavily laden chemically processed foods.
i have also found that for me dairy, grains, wheat and gluten trigger flares.
i've had numerous medication reactions even to vitamins that have landed me in the er and while docs agreee the meds cannot be tolerated sometimes are still at a loss as to how to proceed. some think it may be the bonding agents in some cases, rather than meds themselves.
the cheesecake i had yesterday while delicious with each and every small bite literally has me in an undeniable huge flare; not worth the few minutes indulgence.

the new doc i saw today recognised FMS as what it is, and immediately referred me to an associate of hers well versed in all phases of the syndrome.
i've endured the syndrome for more than 15 years now, and finally have been given the indication that this specialist will take the time necessary to treat my case in all phases, dietary, physical and has even treating the stigma even i myself have with it.
it's difficult for me because i used to teach aerobics at a southern california women's spa and have always been active; now this "thing" limits some of that and i have a hard time dealing with that on an emotional level; i still expect to do whatever i want whenever i want!
the limitations rear themselves as simply refusing to let me continue with that thinking. i sit here looking at the mountain bike i recently bought; knowing i cannot take advantage of these too few left lovely 70 plus degree fall desert days.

making sure to stay hydrated and get enough sleep are a few other things i've been neglecting, and i know better! hopefully a few visits with the sports physical therapists and some massage therapy combined with heat and ice packs will alleviate this indescribable burning pain untill i see the new doc and get on a complete life renewal program.
i am very much looking forward to it; life without searing, burning, stabbing pain would be more than nice!
before today the last time i cried was last spring when my dear mother passed; but i was reduced to tears after talking with my boss about this crazy syndrome after my dr appointment. i hate feeling so powerless over something that takes over my body for weeks at a time, sometimes months even with the fighting pain continuously.

fighting this kind of pain even takes it's toll on my breathing patterns i notice.
i wonder if anyone else with FMS has noticed this for themselves?

sorry to ramble, thanks for reading AND your kind words; i cannot answer your query because i won't take the strong stuff prescribed; as many years back i was practically immobile for months then, even while on those types of medication.
even in these depths i prefer less invasive therapy and still seek alternatives.
hopefully a managed dose of supplements, herbal therapy, monitored pt, and a doc willing to go through the long process of ruling out what will and won't work for me will bring relief.
for anyone with this i can truly identify. Health and Godpeed to all of us.
 sammysalt
Joined: 9/7/2005
Msg: 8
Fibromyalgia
Posted: 11/8/2005 11:48:51 AM
You were talking about your body going to sleep, and the thick blood.
There is fluid in the blood, and when you lay still the clear fuild weighs more and settles. When you have a lot there and its thick, the blood don't run normal, putting your body parts to sleep until you move, and making you hurt and be stiff. (Have you ever woke up and one part be really cold and not the other parts.)
Don't belive me, poke your finger on one hand, and see if its thick are thin, and then do the other. Sometimes they are different, because of where the fuild is at in the body. When you lay still and get up, you hurt more for awaile until you get it worked lose. When the sceincetist find away to keep it from settleing they will have fixed it, and the signs will go away.
 psychman
Joined: 8/5/2005
Msg: 9
Fibromyalgia
Posted: 11/11/2005 1:03:12 PM
Thank you for the post, 2ndhandrose. I will look at the website. I have researched this topic so much, I feel like I could write a book about it.
 SilverSeven
Joined: 8/28/2005
Msg: 10
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History
Fibromyalgia
Posted: 11/13/2005 4:22:31 AM
I was diagnosed with FMS almost 3 yrs ago, but I've been really lucky so far. I have a high pain threshold and my symptoms are usually on the lower end of the spectrum, interference-wise. But when I get a flare up, it puts me down like a punch from Evander Holyfield.

It can be tough but I try not to let the disease define who I am or what I can do. I've learned to listen to my body more and respect its needs more than I would've if this had never happened to me.

I found it difficult to work out at the gym that much because most of the machines and exercise classes were too painful so I wasn't getting any cardio or muscle strength work done. But then I tried a bellydance class and it's been the best thing I ever did for my condition. I also went to a doctor of Chinese medicine and had accupuncture done to rebalance and unblock my energy pathways. Keep in mind that alternative medicine can work in cases that traditional western science thinks are beyond help. Keep exploring options and treaments.
 ~softEDGE~
Joined: 6/12/2005
Msg: 11
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Fibromyalgia
Posted: 1/15/2006 5:29:07 PM
the pain management "specialist" i was referred to last week was a huge disappointment;
despite his option of prescribing pilates and other types of therapies,
he only wanted to discuss narcotic therapy and cortisone shots that
as he said were "likely to last 6 to 12 months" for living pain free.
no thanks, as i'm not into narcotics or shots.

so, it's back to pt and massage therapy for me.
 ~softEDGE~
Joined: 6/12/2005
Msg: 12
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Fibromyalgia
Posted: 1/15/2006 5:29:15 PM
oops, double post; sowwy.
 marita_b
Joined: 6/15/2005
Msg: 13
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Fibromyalgia
Posted: 3/31/2006 7:45:24 AM
The most frustrating thing I have found is that I have been going to my fam. doctor for many years with signs and syptoms,..so many of which that seem unrelated to one another,...

yet they are ALL there on the list for fybro,...
why the he!! didn't my doctor send me off years ago to be tested???,...
has anyone found the same problem with the lack of knowledge of physicians?

I am almost beside myself with the intensity of pain and lack of mobility that I feel about 102 yrs old,...but all my doctor seems to do is give me pain meds,...a handycap sticker and a cane,..so,..now what???

and what do you do if you are on a very low income and have no coverage for perscriptions???

I can't afford to buy vitamin and mineral supplements,..and I'm this close to dsaying what's the point and call it a day,...

as for the quality of life,..there isn't much,...

to make matters even more frustrating,..from time to time I feel almost good enough to be normal,...I think that's just God's way of reminding me of what that is,..and it had me wondering if I could possibly be making it all up,....

I have been suffering with IBS,...for over 15 years,...and have had hypothyroidism for at least as long if not longer,...both of which can lead to Fibro,...

I know they make strides in medicine every day,..is there a cure?
and or a best way to deal with this disorder,....one that doesn't cost a lot?
 ~softEDGE~
Joined: 6/12/2005
Msg: 14
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History
Fibromyalgia
Posted: 3/31/2006 8:09:31 AM
why the he!! didn't my doctor send me off years ago to be tested???has anyone found the same problem with the lack of knowledge of physicians?
there is NO test, per se, the only one i know of that isn't definitive is the "stress points" which can send one practically flying off the exam table in the pain of an acute flare.

this isn't a disease, it's a type of disorder as far as i know. i have off and on struggled with this since the early 90's when i had my most excruitiating and longest lasting "flare." now it seems to be triggered by my allergies, periods of extreme stress or overload of tiredness. the best remedy i have found, thankfully, is recognising when i am going into a flare and paying attention to get enough rest, eat well, and light excercise until i am feeling well enough to resume more extreme physical activities again. in other words, be nice to yourself and listen to your body symptomology when you feel it coming on. in the midst of it do your best to relax and baby yourself, don't let it take over your life completely if you can avoid it. it is a most insidious monster.

medical science is called a "practice" because that's exactly what it IS.
everyone is made up differently and this thing isn't a disease, it's a syndrome.

we are far more individually responsible for our own bodies than any doctor ever could be;
so i believe it is up to ourselves to learn the slight shifts indicating an impending flare, and acting accordingly. avoid as many chemically processed foodtuffs as possible, (it's cheaper to eat healthier, anyway) and any known/learned irritants... i cannot stress enough the benefits of relaxation and proper rest. mild excercise will help to lightly keep the joints and tissues more flexible and fuller/better sleep will ensure a quicker recovery.

my worst flare lasted a good three months and now i know at the first signs to get to my doc, pronto, get a kenalog shot, take breathing treatments via my nebulizer, eat better and get as decent and full rest as possible. i'm in an allergic flare right now, been out of work since wednesday, but i know taking care of myself now will keep me out of the hospital, and i will be better by monday and back to work. i also know if i didn't heed my symptoms i may get extremely sick with some variant viral problem, and well end up in the hospital er for days, as i did last year, with excrutiating immobilizing pain, a fever of 103 for days despite taking steroids via iv, orally and inhaled, along with various other meds. i dont wanna go there again... and several docs were stumped, fibromyalgia is a cluster syndrome, and affects and is brought on by as many different things as there are people afflicted with it.

good luck to you marita, we are here, and we DO understand your frustration.
 marita_b
Joined: 6/15/2005
Msg: 15
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History
Fibromyalgia
Posted: 3/31/2006 9:34:43 AM
FYI to me,...just how do you get the rest you need if youo can't sleep but a few hours at a time,...and even with that you are constantly in discomfort no matter what position you are in?

and can this be brouoght on due to enviromental things like fungas in your home?

I have had a lot of pain in my life from a variety of sources,..and usually any long term pain you can adjust to and modify yourself around but this,...it's like the severety,..and location keeps moving,...making it more difficult to adjust to,...

only recently I have been having some episodes of sleep apnea making the whole rest thing even harder,....

I do appreciate your help,...

what if any tests have you been sent to for verification?
 ~softEDGE~
Joined: 6/12/2005
Msg: 16
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History
Fibromyalgia
Posted: 3/31/2006 10:46:06 AM
sleep/rest issues
for me, this has been one major factor in my flares.
i can only tell you what works for me. i have undergone relaxation and biofeedback therapy.
a warm or sometimes hot bath tires me to the point of sleep; but not necessarily restful or length of restful sleep. whereas i once took 3 and a half pills of a benzodiazepene, (which is very addictive and thusly dangerous for many to take) i've weaned myself down to literally 1 quarter of klonopin (clonazepam) each morning and at bedtime. from 3.5 pills down to 1/2 pill a day... it stabalizes my blood pressure, anxiety, sleep pattern and has worked great.
it completely changed my life and has made it manageable and productive again, but it took more than 10 years to get to the point i am now at.

environmental issues
have played a huge part in my flares, as well. i have many allergies, to medications, to some of the bonding agents in medications, laytex, some foods, and environmental things such as molds, various chemical agents as in pesticides, food additives, dyes, perfumes, etc.

my emergent situation last year was suspectedly due to mold in my apartment which i lived in and the management company refused to do much about until they hazmatted my bathroom as i lived in it...at which point i checked myself into a nearby hotel and informed them they would be responsible for the complete stay. the flooring had been replaced due to mold in the bathroom's foundation spread to the interior framework, and then to the flooring. i was given a $400. moving allowance (big woop, huh) and was given a new lease into another apartment not only in the same complex, but simply onto the other side of the same building. by the time i had moved, within one month i found myself so virally ill i went to my dr and was imediately ambulanced to er for several days with high blood pressure, low oxygen levels and a dangerously high spiking fever for days and something attacking my cns with no known cause to the docs. i am grateful to be here today, after serious steriodal treatment and benadryl to counteract the treatment. the at home steroidal treatment included a tapering off from it that took 2 weeks before i was able to go back to work. i was completely and totally out of control of what happened to me at that time. so i know not what to say except molds and fungus are very dangerous to me. i cannot tolerate any cillens, sulfas etc. but we all are different, so our treatments are different.

my first serious allergic reaction resulted in total central nervous system shock, an acute reaction known as anaphylaxsis to allergy shots i received as immunotherapy treatment in spain, in 1987. i received twice weekly injections of what i was allergic to, in an effort to gradually change my body's resistance and acceptance of the agent(s). each time i was made to wait in the lobby after receiving the injections in case of a reaction. but in my case, i reacted more than an hour after getting my injection. had i not chosen to stay on base after my injection that day, surely i wouldn't be here now. i lost consciousness and luckily was around other americans that understood i wasn't merely fainting, and called for an ambulance. i remember the young paramedic with me praying, sweating and crying as i drifted in and out of consciousness. long story short, after entering the er, my allergist ran to administer benadryl and epinephren which in the correct dosage saved me.

i am in a flare right now, brought on simply by the tremendously huge ratio of pollen from a now outlawed from sale or planting of any more of a simple mulberry tree blooming in my valley. unfortunately, most of these trees are confined near a downtown area very close to that in which i work, and we have had high winds the past week or so. the current reported ratios is more than 1500% per cubic meter in my city for the last several days, very high. i have been home sick and off work since wednesday, with symptoms of acute lung/chest pain, difficulty breathing, low oxygen rate, high bp and restlessness. i am grateful and fortunate that my boss recalls my having ben ambuolanced from my worksite a few years back after taking a new medication and also the mold issue i had last year that also sent me to the er for days after mold exposure. i was given one steriod injection wednesday, prescribed a broad spectrum antibiotic and am taking home breathing treatments via a nebulizer. the chest pain is still here, as is the pain throughout my joints, which to me indicates a fibro flare.

as i said earlier, i know of no tests that prove or disprove the existance of fibromyalgia, save for the pressure point test, wherein certain trigger points are pressed upon one's body. the immediate pain shoots throughout the body, stemming from various certain "trigger points."
if they manage to hit on them, you will know it, immediately. and the doc will know from the severity of your reaction. that and sedimentation ratio which indicates the rate at which certain cells in your blood fall in relation to others, only showing somehow a scale of pain within the body, but, unfortunately not showing from where or what. so sed rate tests aren't very indicative of much. my first high rate was a 66, whereas a normal rating is under 10 if i recall correctly. but it still doesn't show WHERE the pain is or from what cause. the doc whose care i was under at that time freaked and prematurely told me i was a rhematoid variant or had some sort of rare cancer or leukemia. not great news to hear, especially feeling so very ill. that was my first flare, and i was given high doses of pain medication which left me as incapacitated as the pain itself. it was like the worst burning painful flu but wasn't the flu, it was a viral reaction as yet unknown in origin.

whereas i was once very active, having taught 10 or more classes a day of aerobics in the 80's i now must be careful to not overdo it, and that's ok because i know not to push myself too hard. swimming, simple stretching and light weight training, a bike or hike are ways i have managed to do ok with, without going overboard. there have been times when the only relief i received from pain was while in physical and massage therapy, and could actually fall asleep while undergoing it, but very restless at home when i was supposed to be relaxing. near impossible to relax when your body chemicals and sleep pattern are already involved in a vicious cycle of a fibro flare. even more so when one cannot tolerate many medications normally used to treat those symptoms.

i have rare flares now, and they seem to be abating in pain, but i am ever vigilant when i begin to physically not feel right, or become overtired, as those times leave me susceptible.
again, finding the right set of doctors is most beneficial and key to your health.

i suggest you do any and everything possible to get away from the mold, it CAN prove deadly to those with sensitivities to it. also, again, good luck to you in finding the right doctor, a good team is a necessary part of any treatment. while bedside manner is less important than knowledge, it sure does help to have an understanding and caring doctor that LISTENS to you, respects you, and encourages you to become the most necessary factor in your own health. i am careful to only see doctors that accept and work with me regarding my numerous allergies and take me seriously rather than the ones that consider themselves Gods that are all knowing. after all, who knows us better than ourselves?
 marita_b
Joined: 6/15/2005
Msg: 17
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History
Fibromyalgia
Posted: 3/31/2006 4:25:15 PM
that seems to be one of the biggest problems,...finding a doctor that actually puts it all together and doesn't,...there,..there you,.... and send you on your way,...

It seems from the information I have gathered here and elsewhere this is almost a designer disorder,...made different for everybody,...

just like no two people endure pain or even feel it the same,....

so I am assuming the treatments will be the same,...or rather different for everybody,...
I happen to have a high tolorance to all serious pain meds up to and including morphine,..which means for my body weight I require about 3x the normal,..and then I usually if I'm lucky only get enough relief to turn down the volume,...and be functional,.....

this is something that hasn't progressed over years by abuse but has always been even as a child,....and I reqire equal doses of antinauseant to be administered with it,..many nurses have refused even when it was writen in the chart ordered by my physician,...

So I have learned that pain hurts but it won't kill you,....although sometimes that's almost a tempting choice,....

and now I can't afford any meds,....anyway,....my GP gave me a script for meds SHE wanted to give me for discomfort which costs about 150.00 per month,...she gave me a script to cover the whole year,...I asked her for something equal in strength but only about 10 bucks for the month,..and she refused,..both were narcotics,...so clearly she isn't listening or caring,..and I need to find someone who considers what is possible for me,...and what is out of the realms of possibillity cost wise,...

and if it is the moulds that make it worse here...I can't even afford to move,...

Here in Canada seeing a doctor may be free but you get 5 minutes with them and then it's next,....

My ex was a Doctor (well actually he still is) ,..gastroenterologist and I ran the clinic for him and spent many of our years together being his office/endoscopy assistant,...so I know all about the God syndrome,...

and you are most deffinately right,...the only doctor that ever helped me for my migrains which are chronic as well was a fellow who also suffered from them,....

sometimes it takes one to help one but a dr with fibro???

and the problem is those living with you get tired of your constant complaints and inabillities,...too,..and who can blame them???

PS,...if you pass out do you wear a medic alert for that?

you have been very helpfull,...and forthcoming,...although I have been dealing with the signs and syptoms for over 5 years,....undiagnosed,...I am at the very early stages of getting help,....but I think I have earned the right to demand nothing less,....and am digging in my heels,....I am not going to be patted on the head and sent on my way again,....
 DaisyGirlKY
Joined: 3/15/2006
Msg: 18
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History
Fibromyalgia
Posted: 4/2/2006 5:32:08 PM

and can this be brouoght on due to enviromental things like fungas in your home?

I don't know if it's brought on by that but I know it sure doesn't help things. When I lived with my ex there was a serious mold problem in the house. I literally had a constant headache (of varying intensity) for over two years. I had a constantly refilled rx for Demerol. The Demerol didn't do much except maybe take the edge off the pain for a couple hours.

My fibro pain is not as constant as it was when I was in the other house. And I no longer have a constant headache. My headaches eased up and then went away with in two months. The pain in the ass and neck was also greatly reduced when the divorce was finalized. I still have bad flare ups but nothing like before when I lived in the moldy house. My main reasons for flare ups now are lack of sleep and stress.

I hope you find something that helps you feel better. Not everything works for everyone. I was told to try extra B vitamins and it didn't help. But it may just have been because I was in the moldy house at the time. I can't stand the smell of the B vitamins so after five months of 'nothing' I quit taking them YMMV Fibro sucks.
 dconnel
Joined: 3/21/2006
Msg: 19
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History
Fibromyalgia
Posted: 4/3/2006 7:46:23 PM
HELLO, I HAVE FIBRO. HAVE HAD IT FOR SEVERAL YEARS. I WAS DIAGNOSED AS HAVING MULTIPLE SCLEROSIS BECAUSE IT HAS MOST OF THE SAME SYMPTOMS. BUT WITH M.S YOU CAN GET SOME RELIEF. MOST DRS.WILL TELL U IT IS ALL IN YOUR HEAD. WELL IT IS IN YOUR HEAD.LOL NOT FUNNY BUT IS A NEUROLOGICAL THING. THE BRAIN CONTROLS EVERY PART OUR BODY. IT IS EXCRUCIATING. LOSE VISION. LOSE MOBILITY. SEVERE HEADACHES. LEGS JERK UNCONTROLABLY, SEVERE PAIN FROM HEAD TO TOE. CANT BEND, WHENU DO BEND CANT STRAIGHTEN BACK UP. BASICALLY TAKES YOUR LIFE AWAY. VERY DEPRESSING. IF YOU DONT HAVE INSURANCE YOU ARE SCREWED. YOU NEED TO SEE A DR THAT STUDIES FIBRO AND HAS SOME IDEA OF HOW TO TREAT IT. MOST PPL WHO HAVE IT ARE ON NUMEROUS PAIN MEDS. AND ANTIDEPRESSANTS. I TAKE AMYTRIPTILYN FOR THE PAIN IN MY LEGS. IT IS SUPPOSED TO HELP WITH THE JERKING. MY KIDS SAY THEY STILL JERK, BUT IT MAKES ME SLEEP SO I DONT KNOW. I ONLY TAKE IT BEFORE I GO TO BED BECAUSE IT MAKES ME SLEEP FOR AT LEAST 10 -12 HOURS.
SOME TIMES I STILL CANT SLEEP EVEN WHEN I TAKE IT THE PAIN IS SO BAD YOU CANT GET COMFORTABLE ENOUGH TO SLEEP. I ALSO TAKE DEPAKOTE WHICH IS A SEIZURE MEDICINE, I DONT HAVE SEIZURES BUT IT HELPS THE HEADACHES. I TAKE IT TWICE A DAY AND IF I MISS ONE DOSE. I WILL HAVE A HEADACHE FOR AT LEAST 3 DAYS . I HAVE ONE EVERY DAY BUT THE MEDICINE TAKES THE EDGE OFF SO I CAN AT LEAST HOLD MY HEAD UP . USUALLY SO WEAK CANT STAND OR GRIP ANYTHING. SOME PEOPLE USE VOICE ACTIVATED PROGRAMS THAT TYPE FOR THEM. I DONT HAVE ONE, IF MY HANDS HURT THAT BAD, THEN I DONT USE THEM ON THOSE DAYS. MOST OF MY PAIN IS IN BACK , NECK KNEES AND ANKLES. THIGHS . I HAD KNEE SURGERY TO TRY TO HELP IT. IT HELPED FOR MAYBE ONE MONTH THATS IT. ANYWAY JUST TRY TO BE SUPPORTIVE OF YOUR FRIEND WHO HAS IT AND TRY TO LEARN AS MUCH AS POSSIBLE. THERE IS A DR IN LAKE TAHOE CALI. WHO TREATS IT AND YOU CAN GO ONLINE AND HE WILL SEND YOU FREE INFORMATION AND DVDS ON IT. GOOD LUCK.
DONNA
 dconnel
Joined: 3/21/2006
Msg: 20
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Fibromyalgia
Posted: 4/3/2006 7:49:41 PM
FIBRO CAN BE BROUGHT ON BY TRAMA TO THE BODY, LIKE WHIP LASH. ANYTHING TRAMATIZING TO THE NERVES OF THE SPINAL CORD LIKE YOUR NECK AND BACK. CAN ALSO BE CAUSED BY SURGERIES. ANITHESIA TUBES THAT GO DOWN THE THROAT CAN DAMAGE NERVES IF NOT DONE EXACTLY RIGHT. THIS IS WHAT MY DR TOLD ME. I WAS BORN WITH HEART DEFECT AND HAVE HAD NUMEROUS SURGERIES. I HAVE ALSO HAD CANCER AND HAD SURGERY FOR THAT AND MY GALL BLADDER. BUT I WAS ALSO IN A VERY BAD AUTO ACCIDENT SOME YEARS AGO SO I REALLY DONT K NOW WHAT CAUSED MINE . THE DR SAID COULD BE ANY OF THESE.
 ~softEDGE~
Joined: 6/12/2005
Msg: 21
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Fibromyalgia
Posted: 4/3/2006 8:48:16 PM
LOSE VISION. LOSE MOBILITY. SEVERE HEADACHES. LEGS JERK UNCONTROLABLY, SEVERE PAIN FROM HEAD TO TOE. CANT BEND, WHENU DO BEND CANT STRAIGHTEN BACK UP. BASICALLY TAKES YOUR LIFE AWAY. VERY DEPRESSING. IF YOU DONT HAVE INSURANCE YOU ARE SCREWED. YOU NEED TO SEE A DR THAT STUDIES FIBRO AND HAS SOME IDEA OF HOW TO TREAT IT. MOST PPL WHO HAVE IT ARE ON NUMEROUS PAIN MEDS. AND ANTIDEPRESSANTS.
i am sorry to hear of the severity of symptoms above referred to as fibromyalgia. i've been diagnosed for more than fifteen years and have never dealt with any of the above symptomology, with the exception of difficulty falling asleep. and that, coupled with the amount of stress i encounter or allow to overwhelm me without doing as i know i ought, as relaxation/meditation, swimming, hiking, etc. i notice when i make and take time out to do things i really enjoy, or even do more little things i enjoy i've noticed my flares dissapating in severity, but i also partly attribute that to the dry and warmer climate i live in, and even that is suspect, who knows? my intolerance of chemical, medicines, foods and herbal treatments have not lessened in their severity. i refuse to be on numerous pain meds or find a need for any antideppresants. i'm allergic to tylenol, so i have to take motrin, ibuprofin or aspirin based meds for pain. i'm currently in a flare for over a week, and have yet to take even an ibuprofen, i just don't like taking stuff if i can manage without it. steroidal and antibacterial treatments, while lifesavers, come at their cost to my physical self, but the benefits ultimately outweigh the inconvenience to drag me out of a flare, or more seriously, an er visit or hospital stay to get my system back to safety and out of danger.

again, fibromyalgia is an elusive and insidious syndrome, with the sufferers having such varying degrees of symptoms making it difficult to diagnose. i wish all with it, or those that care about someone with this monster, all the best in this maze of confusion and pain.

do whatever you must to keep yourself as healthy as you can, rest, eat right, excercise as mildly or as strongly as you can or need to gain strength. keeping things simple is best for me. i can't say enough about relaxing baths, whole foods and healing physical touch helping more than i can say. knowing there is an end to the pain and flare helps me get through it, and i can concentrate on living to my fullest potential. fibromyalgia taught me i used to take my health very much for granted, and also that i will never have that option again, so i'd better make the best choices, and take the best options now to ensure my best future.
 marita_b
Joined: 6/15/2005
Msg: 22
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History
Fibromyalgia
Posted: 4/5/2006 5:07:09 AM
what does MS, and MHP stand for and the threrapy you mentioned has been around since Jesus was in shorts,...for some it works and for other's not so much there are many web sites and books on the subjets,...

I have tried it myself for migraines in the past,...occasionally it helps,..often it doesn't but it does NO DAMAGE, has no adverse side effects that I know of and so it can't hurt anyone to give it a go,...like they used to say about chicken soup,...

may not help,..but,..couldn't hurt,...

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UPDATE,...I had an appointment yesterday with my family doctor,....who first appologised for the mix up with her office staff last week,..and then we talked,...for over an hour which is kind of rare for a GP office visit where they hustle you in and out ,...usually in under ten minutes,...

I mention this only because of what I had done to prepare for this visit,...after I left her office last week I was as usual in a great deal of pain,....but now I was mad too,...

so I sat down and wrote out everything I had that was physically bothering or hurting or immobelizing me, (at that time),...
I gave each sign,and symptom,...a grade 1-10 in severity of pain,....and I added the first onset,...how long each had been going on that was currently present,...and what I have tried that made it better,..worse or had no effect either way,....

I also added any signs and syptoms that I had previously complained to her about and what she told me to do,..be it theraputic,..or RX,.. and again what the outcome (if any) there was.

and with all of that I went surfing on the net,...to see what could possibly responsible
ALL THOSE SEEMINGLY UNRELATED SYMPTOMS,....the only thing that kept coming up again and again is fibromyalgia,...

So I read as much information as I could AND,..I found one site that summed up everything I had endured and suffered,...(not to mention complained to her about) in the past,..and was plauging me still,...One site had in 3 pages summed it all up,...If I didn't know any better aI could have written it,...I also printed it up and had it with me for my office visit,...

First during that hour I recapped everything I had already brought to her over the course of the better part of 10 years,...

then I explained what was going on with me that day,...I asked her if she could think of anything that could account for all of that,...Fibro was among one of her choices,...

So I asked her how much she knew about it and sadly it wasn't what I had hoped,...so I gave her all of my information,...my own notes and the site info,...

Because over the course of the last ten years she had already sent me on numerous test,..be it bloodwork or x-ray, or MIR,..or bone density etc,..etc,...etc,...all of which came back either on the high end of normal or normal,...now this made sense to her too,...

because once a suspicion of fibro is being considerd,..the preponderance of testing is done,..
NOT TO CONFIRM the diagnosis,..but TO RULE OUT ANY OTHER POSSIBLE CAUSE,...or contributing factor,...(IE,...I have been IBS for 15 plus years,...a migrain sufferer over 35 years,...have been in 3 major car accidents causing whiplash,...had multiple surgeries,...and am hypothiroyd for almost 20 years,...as well as osteo arthritic (for which I took VIOX for almost 3 years) about 7 years now stemming from an on the job related injury)

so there is this chicken egg factor at work,...do I have fibro because of a preegsisting factor,...or is it the end result??? Ultimately it'll be impossible to know for sure but who cares,..at least now it is being agnowledged,...and can be dealt with,...

In the intrim she is treating me on the presumption and for the symptoms that are currently present,...(THANK YOU GOD!!!!),....and thank you who have helped me here,...
I never would have guessed the simple act of listening,..and validating me,..would mean as much as it did yesterday,....

Something worth mentioning,...I have actually on many occasions minimized the true ammount of discomfort and severrity of symptoms to her,...now you would think "I KNOW BETTER" having spent a great portion of my life working in a nursing capacity,..in hospital, clinic and private home settings,...turns out,...this is NOT UNUSUAL,...seem to be that many of us do just that,....so that in case the testing comes back negative,..which many of us know often is the case,...we will seem less nuts,...

my recomendation to you all out there,...DON'T DO THAT,.....

the best weapon we have in supporting our own personal heath,...is DOCUMENT!!!!
I can't overderstate the importance of this,...because we also all forget,...

one other thing to mention is,...there is no bigger patsy on the planet than a person in a great deal of pain,....we will do almost anything try almost anything,...
JUST TO MASKE IT STOP !!!!!!,....

So before any of you shell out a lot of money on things,...do your own research,...
As I discovered,...our home computer is a powerfull thing,....and it's all out there for you and I to tap into,....

because this insiddious disorder comes with a great deal of pain,...and physical limits,...
we will,...or have tried a lot,....and because we are all as different to how we respond to therapy and medication,... as there are symptoms of fibro,....we should try it all,..

including reflexoligy,..accupunctor,...massage therapy,..hot wax,...EFT,...whatever,...
if you find something that works for you,....GREAT!!!!,...fabulous even,...

****just be carefull of calling any one thing the "magic bullet" for everybody,****
because it it has with it the potential of seting us up for yet another failure,...
and haven't we all had enough of that already?????????

just remember where there are desparate people,...there are people willing to exploit them for it,...
 marita_b
Joined: 6/15/2005
Msg: 23
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History
Fibromyalgia
Posted: 4/5/2006 5:48:06 AM
http://www.sover.net/~devstar/
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This is "THE BEST EVER" site I found on the subject,...

it has everything on there from questions,...diagnostic aids to physicians,...and everything you could want to know on treatment,...

Dr DevIN STARLANYL,...is a best selling author who has done extensive research and writing on the subject and many doctors use her information as the bible to help them,..help their patients,...

it also is where I found the three pages that I could have written based on my own experiences and that I took copies of to my physician,,...
 marita_b
Joined: 6/15/2005
Msg: 24
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History
Fibromyalgia
Posted: 4/6/2006 9:15:56 AM
If you google the doctors name,...you will find a lot of sites,.that are informative,..

It seems she is the person other doctors go to,...for help in looking after their patients,...
as for cortisol shots.......the following is from the American Pain Foundation site,...
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The research on fibromyalgia supported by NIAMS covers a broad spectrum from basic research to clinical studies to behavioral interventions. For example, NIAMS investigators are examining the interactions between the nervous system and the endocrine (hormonal) system and regulation of adrenal function in fibromyalgia patients. Studies have shown that abnormally low levels of the hormone cortisol may be associated with fibromyalgia. Researchers are studying regulation of the function of the adrenal glands (which make cortisol) in fibromyalgia. People whose bodies make inadequate amounts of cortisol experience many of the same symptoms as people with fibromyalgia. It is hoped that these studies will increase understanding about fibromyalgia and may suggest new ways to treat the disorder

http://www.painfoundation.org/page.asp?menu=1&item=2&file=documents/doc_006.htm

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so as with any treatment for some it works and is necessary,..for others not so much,...

I suspect this disorder is going to mean a lot of trial and errors for all of us,...and some of those treatments are going to hurt, I dare say, but pain just like this disorder varries for all of us,..what might be agonizing to me may be nothing more than an irritant to someone else,...

however,...even if the treatment does hurt,...I look at it in the same way as Dentistry,...
sure it hurts to get a tooth pulled,....but keeping it in is going to hurt more,..and for a lot longer,....
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the above site also lets you sign up for regular updates in research, and development,....in the management of many other diseases as well as Fibro,...this I think is helpfull because as I discovered and is certainly applicable to me ,....many of us have other conditions that exaserbate the fibro,.....like IBS,...Hypothyroidism,..etc

 Rythmn
Joined: 1/21/2006
Msg: 25
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History
Fibromyalgia
Posted: 4/13/2006 1:23:47 AM
i am looking at about two years worth of posts here re "fibromyalgia". so, i would like to add a little bit of info as well. take what you want and leave the rest:
1) fibromyalgia is a description of many symptoms that group together a la "syndrome". nonetheless it needs to be addressed as just that. if you had a stomach ache wouldn't you want to know if it was gas or cancer? well the same goes for a syndrome. so, what causes it?

2) there is a lot of overlap in diagnosis with fibro, chronic fatigue, gulf war syndrome, hashimoto thyroiditis and often with ms, als, lupis and other autoimmune disorders. often a person will get more than one of these diagnoses. 3) many people are given steroids which can be absolutely devastating IF, in fact, your fibro is caused by lyme disease or one of the other tick co-infections such as babesia , ehrlichioses, et al. only recently has a form of micoplasma which is a contributing factor of gulf war syndrome been also linked to the tick as a carrier.

3) most doctors are totally ignorant about lyme disease, most tests are not sensitive to detecting it and many hmo tests are cheap and will show negative results as this is a highly sophisticated little spirochete that scientists have documented to avoid detection in many ways. after a prolonged time it leaves the blood stream, has many forms that hide and often enters heart and brain tissue undetected. sometimes spinal taps are needed, but less painful approaches require spec scans and then again, only "lyme literate" doctors and practitioners understand the selection, administration and interpetation of these findings. for example the babesia test was until only a couple of years ago limited to the east coast strain. only recently was a west coast strain discovered and those testing negative until that point, suddenly tested postive.

4)further most chronic, long term lyme sufferers require very long term doses of antibiotics which the average doc knows nothing about or is afraid to treat for fear of retaliation from his group practice peers and insurors who need to keep the costs down. advocates currently are passing legislation in the US, state by state, to curb this attack on lyme literate physicians.

5) children are severely affected by lymes. in my own neighborhood a young teen tri-atheloner was diagnosed with lupis and confined to a wheel chair. fortunately her coach knew me and she went to a lymes literate doctor. she now walks, but still copes with cognitive issues and will be on antibiotics a long while.

6) many lymes patients develop allergies and chemical insensitivies and share a number of strange symptoms, some of which come from the lymes, some from the coinfections and some from the required meds themselves. also for some, the immune system breaks down and other viruses , bacteria, fungal infections can invade.

7)for some, there are psychiatric like symptoms ranging from secondary depression and anxiety about the illness to actual psychotic behavior. research by brian fallon at nyc columbia university is addressing this as well as long term antibiotic use and is funded by the nih.

8) the good new is that there is hope for this, but you need to get educated and be willing to make your own decisions. sometimes you need to pay for the tests and treatment or get involved with the advocacy groups so you can get help. the longer you wait, the worse it gets. my good friend and her little girl after six years are symptom free but still take antibiotics. my other friend just had a baby which many said was impossible. she had the umbilical cord tested and the infant is lymes free.

anyone wanting more info after searching the web for the more appropriate references, can fell free to contact me and i can forward to more appropriate references. i wasn't prepared enough to bring them to this particular response as i didn't expect to see the posts, but with a little preparation, i hope to be of any assistance if needed.

i might add that in my "past life" i researched and addressed a lot of health issues and i can only see that natural remedies only go so far. if you had cancer or AID or syphilis would you only use natural remedies? no. but that's not to say they don't assist in rebuilding immunity.

good luck to all of you and i hope you find this post.

namaste.
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